Politics of trying to be an advocate parent

I’m getting very frustrated…

As all of you that follow our journey regularly know, I am extremely gung-ho on trying to work to find a treatment for Hannah.  I’ll be damned if I don’t do everything in my power to try and save her life!  Admittedly, I can be a bit TOO gung-ho at times and may come up with ridiculous ideas sometimes, but I know in my heart I am doing it for the right reasons.

I don’t know the politics of the reasoning behind it, but the National Gaucher’s Foundation focuses their resarch primarily on type 1 and not on Gaucher’s Disease type 2 or type 3.  Perhaps it has to do with the fact that 95% of the people that have Gaucher’s Disease are type 1.   I really don’t know, and I haven’t really approached them as to why (although I do have a line of communication open with one of the directors who has been extremely supportive and is willing to talk to me next week about it).  So, my beef really isn’t with them.

There is the wonderful organization called the Children’s Gaucher’s Research Fund.  It was started over 10 years ago by a family who lost their son to Gaucher’s Disease, and they focus solely on type 2 and type 3.  I was referred to them by the National Gaucher Foundation.  This father has done amazing work, and I am in awe of what he accomplished in his son’s memory.  But, I have been trying to figure out if they are still a very active organization or if they aren’t really that active anymore. 

I’m so ready to start fundraising and creating awareness, but I can’t ask for money from people for research until I know that research is still being done, and if so, what specifically are we shooting for?  I have HUGE ideas in my head, many of you already know that.  I just hate the fact that I can’t get started.  It’s been over a week or so since I heard from the guy who runs it, and I am sure he is extremely busy, but I need to get started on this.  I feel like I’m already wasting time that could be used to try and save Hannah and the other kids with type 2 or type 3.  And if they are no longer very active, then I want to know so I can start my own foundation so that we can get money to researchers who have already been working on finding treatments for type 2 or type 3.

I hate sitting around not being able to do anything.  I know a few of you have asked about a fundraising button on the side, and as soon as I can find out exactly what is being done, then I’ll feel more comfortable asking for donations for research (as for our personal financial situation, that is taking a far back seat to getting money to researchers)!

I hope to hear back from somebody soon, as I’d rather focus on fundraising and awareness for an existing, already active group who has scientists and researchers in place.  I’m ready to kick some Gaucher’s Disease you-know-what!  I feel like yelling “I’m here!  I’m ready to raise money and create awareness!  Use me!  Abuse me!  Let me help!!”